Sharing the Journey to Diagnosis

The road to endometriosis diagnosis is notoriously long and difficult, and it doesn’t get any easier after identification. There are specialists to see, invasive surgeries to book, difficult decisions to make. This is a scary journey for someone to take on alone, which is why I’d like to discuss the importance of being there for your partner throughout these appointments, meetings and waiting-room stints.

Endometriosis is invisible from the outside and usually doesn’t show up on conventional scans, so it can be difficult for doctors to diagnose. Women who suspect endometriosis must trust themselves enough and be confident enough to disagree with what their general practitioner might say and must be prepared to fight for their endo diagnosis. Having a partner or family member in the meetings and by her side to fight and give strength to keep pushing is so helpful.

I have indirect experience of this through my partner. She suffered from severe pelvic pain and other endometriosis symptoms for years, but doctors always told her she was suffering normal period pain. It took her boyfriend at the time to come to an appointment and fight in her corner for her to be taken seriously and referred to a specialist. Without this becoming a rant about the patriarchal bias of western medicine and society as a whole, let’s just say that having someone there to support her was a massive help. The average diagnosis time for women in the U.K. is seven years, so any help we can offer in speeding that process hopefully will save a lot of suffering.

Once the referral to a specialist has been made, it is just as important to be at these meetings. It will be a new step in your partner’s endo journey ― talking about intimate issues, discussing surgery options, hearing about the prognosis ― and she may find it frightening. I know I always find these conversations frightening and I’m not even the one with endo!

Be there to do what you as a partner or family member do best — offer comfort and strength in difficult times. Your attendance may offer more practical benefits, too. You may have observations about your partner’s condition that she forgets to mention, or may not have noticed, information that is important for the specialist to hear when deciding a course of action.

And, of course, there are the surgeries. These are emotionally and physically traumatic times for your partner. She will need you now more than ever, not just to bring her water or help her to the bathroom, but to be a constant throughout the ordeal, and to be the loving, reassuring face that lets her know she’s not alone.

The journey to endometriosis diagnosis is notoriously long and difficult, but it does get easier when the load is shared.


Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.